My love of music came first. Closing the bedroom door to my adolescent man-cave, I would grasp the corners of my LP album covers, admiring the art. Then I opened it to find the lyrics inside. Discovery in words. While the music has always come first in my world, I created this blog to honor the verse and the poetry. My music in the background.

Tuesday, January 11, 2011

Pushing Through - Segue to Reborn

Time I break the silence on the blog. So much has happened since last September, I could write an entire book. The problem has been every time I've stopped to write something, I couldn't focus on any one part in reflection to jot the first word. Health. It's been all about that.

After being admitted to the hospital in September I was given several serious and rare diagnoses to go with the Addison's disease I've been living with for several years. The trouble was none of my specialists could correlate any of them. Worse yet, they didn't seem to care to try. My wife had made an appointment at the Mayo Clinic in Rochester, MN back in August. Before I ended up in the emergency room, just out of frustration with my worsening condition and lack of interest from my attending physician's. We had to go.

I book-ended November with a couple of week long trips to the Mayo Clinic. The first week I got around on my own fairly well, save for some leg fatigue getting through the airport in Detroit. The last week, Beth was pushing me around in a wheelchair. The reason being peripheral neuropathy from POEMS Syndrome. That is my diagnosis. A single diagnosis that explained everything I've been misdiagnosed for previously. Including, Addison's disease. My POEMS Syndrome was being caused by a single plasmacytoma on my left femur. A malignant lesion the size of my thumbnail that appeared unexpectedly on a PET scan. I needed to undergo six weeks of radiation therapy in order to kill the source of the disease and hope my rapidly worsening condition would stabilize.

As an aside, the song that is playing, "Segue to Reborn" I recorded just prior to my second trip to Mayo. I played the drums as best I could and barely got through the 2 minutes before the legs quit me. The title invoked my state of mind. I was ready to nail this diagnosis and start my treatment and recovery.

At this time, I have seven more radiation treatments left and I finally feel as though things have stabilized. I've got a long road to recovery and don't yet know what permanent damage I will be left with. But, I do know I am very fortunate to have caught this as early as I did. As it turns, the Mayo Clinic is the premier research and treatment center for POEMS Syndrome. A poetic fate indeed. My wife is my guardian angel, and my gratitude is not even fully realized.

I am just now shaking the dust from my lowest point. Which can only mean one thing. Things are definitely looking up! I can honestly say, I am looking forward to the new year. With that, I wish a Happy and Healthy New Year to all of you! God Bless.

Ditto Dee and thankyajesus! for audio proof your talent’s remained gloriously unscathed. The drums? You know what they say ‘bout drummers. But yours sounded topnotch to me… And most importantly, ain’t nothin’ wrong with them fingers! They was flying like always. Seems being reborn is mysterious and smoky until the melodic groove hits and sends us on and up. Play on, Music Man : )

(Catching up)Michael, you & I are too aware of rare conditions & the difficulty it causes in all aspects of life. I KNEW something was really wrong after a few of our communications because you were suffering so much still. As for your HC dosage, I've had long periods of being on high doses (up to 70 per day long term) because of other complications. Even 5mg can make a difference when you are battling something, you are doing the BEST job of it. Keep listening to your body. Keep laying it on the line to your doctors because sometimes they just need to have that eye contact with the "I truly need you to do your job...my LIFE, my family, my quality of life DEPENDS on you doing your best to dig deep & to go beyond textbook answers."

I've been having battles lately, so I feel for you. I just got a not-so-great CT Scan this past Monday & haven't even been able to write about it. You know how it goes, sometimes we have to absorb it before we can move forward.

As for answers from your doctors; POEMS seems so rare that you probably will get a lot of shoulder shrugs. Just make sure you get your script for HC written for a higher daily dose to cover your additional stress doses. I actually get mine written regularly for at least 15mg per day more than I need so it will be on hand automatically for any day it is needed.

How is radiation? Did the PET Scan see any other lesions? I'd like to know how you feel, overall, since treatment. I hope you are keeping an account of it all because you will be a reference point/gold mine to other POEMS patients because of its rarity.

I'll try to post this on your blog too. As for your condition, yes, it's gotten a bit lonelier because of its rarity, no doubt. It's like speaking a language that no one else you've ever known can speak. So much in this world we must do alone, but your sharing is important. Keep being real about it & know that there are others out there who can definitely relate. Your experiences help others, especially when they hear your music. Thanks for the compliment about my family! I'm proud of my Southern gals, the oldest standing next to me, in red, graduated from Texas A&M last year with her Biology degree & my youngest is entering her junior year in college, Child Life Specialist (because she was so affected by having a mother who had bouts of being seriously/critically ill). My husband is pretty awesome as well. Those special moments with family help get your through the rough patches. Til next time...Lana.